Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.

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@luckyme54216

I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.

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luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
What kind of symptoms are you experiencing? When is your appointment?

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Hi There, my name is Bob and My xwife was recently diagnosed with AL. Kind of in the same place you are now, looking for answers. One thing you need too know is you can’t believe everything you read about this disease. It effects each person differently. Sherry found out about her AL when she changed health plans. Thank God she did, because the first blood test reviled that her kidney function was only at 21%. We have been with our doctor for almost 14 years and found out she did nothing when her last blood test showed her kidney at 48%. She more then likely would not be doing dialysis at this stage had she been told. I would like too hook you two if you would like. Please let me know.

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@rosemarya

luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
What kind of symptoms are you experiencing? When is your appointment?

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The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

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Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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@kanaazpereira Thank you for asking me to join in. I was diagnosed with a very rare kidney disease in March 2015. In 1988 I was diagnosed with systemic lupus and had been producing abnormal amounts of protein since then. My doctors had been chalking up the problems with protein levels as a result of the lupus. Finally in 2014 my nephrologist thought there was something different, and needed further investigation. As they did the testing and eliminated possible situations, everything was sent to both Cedar-Sinai Hospital in Los Angeles and Keck USC School of Medicine. The renal pathologist there was hoping that it was not amyloidosis. Instead my disease is called Type 3 Collagenofibrotic Glomerulopathy. There have been less than 50 cases in the world diagnosed and I am the only one in the United States that they are aware of at this time with this condition. Unfortunately I do not have any information I can give you on amyloidosis.
Ginger

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@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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Sorry for the delay, didn’t see your response until now. She is doing pretty darn good considering. She has had a kidney biopsy and a bone marrow biopsy and we have an appointment on the 7th to hear where she is at and to what degree the AL is has spread. We also have an appointment with the cardiologist this week to find out how much involvement in the heart. She is scared but wants the cards on the table so we can move forward with treatment. I want too say that this site has been invaluable for me and am thankful for what you all do.

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@colleenyoung

Hi @jenrico, Welcome to Connect.
We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have AL amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What led to your being diagnosed?

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Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

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@bob100

Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

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@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

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@rosemarya

@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

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Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

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@luckyme54216

The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

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@luckyme54216, I would like to drop in on you and ask if you have been able to get your appointment with a specialist in Green Bay.

I do not have any experience with what you are going through, however, I am familiar with the stress and fear and uncertainty. For myself, I actually found a tiny bit of relief when my condition had a name. I remember when the hepatologist told me that he had 'good news and bad news' for me. (good news-diagnosis: bad news-PSC(progressive liver disease)

Recently, @bob100 has shared some of his experience about educating himself about AL and its effect on the body and organs.

luckyme54216, How are you feeling? And have you learned any more about your condition?

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@bob100

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

Jump to this post

@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information – as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

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